Some advice needed

[moozley]

hey,i'm new to this site so firstly i'd like to say hi! i found out that i had KC when i was 16 and to be honest,the hospital i went to was mince!!!!i left the consultants room with the impression that i was going to go blind!the info given to me was very minimal and totally outwith my understanding!after going quite a few times for lens fittings and check ups,oh and a change of optom,i gained so much confidence in the hospital.have faith that all will come right.i have been going to my hospital now for 6 almost 7 years and they really do try to help as best they can.your son will be fine and once you start to trust your optom or doctor,the whole KC thing won't seem so bad.i am so glad i came accross this site,it's strangely comforting knowing that there are other normal people like me out there just wanting advise or someone to talk to about KC.

[Karl R]

Hi moozley and welcome.

Fortunately attitudes towards what and how much information to give to a patient are changing, and more information as to the effects of KC is now available. It is good to hear of a positive experience.

i am so glad i came accross this site,it's strangely comforting knowing that there are other normal people like me out there just wanting advise or someone to talk to about KC.

It depends as to what you would class as normal...........but I digress and will stop before....... We are all very normal here

Seriously though it is good to be on a room full of people who don't give you a second glance whilst you are trying to read small print and they all know what difficulties you face.

[Andrew MacLean]

moozley

Welcome. I guess I plead guilty to being normal, it's everybody else that seems burdened with abnormality!

All the best

Andrew

[moozley]

hey,how bad is that when you've got 'abrasions' and you can't wear your lenses but your spex don't work anymore and you ALWAYS seem to have something to read!!!in the teeniest little print ever!!!(well,it's probably not that small,i just can't see it! )

[GarethB]

I would like to add just one point;

KC can stabilise, mine has now been stable for over 3 years.

All treatment options for KC should be regarded as different ways of managing the condition, either long or short term.

[mike scott]

lulu

Welcome to the forum

I notice that you are from Manchester, great place huh.

You are more than welcome to attend our Mcr group meetings along with your son, held at MREH. If you want to talk to me on the phone at anytime then you are more than welcome.

Mike

[lulu]

Hi everyone

Many thanks for your support and sharing your stories, really does help. We have all kinda calmed down from the initial shock-horror!

We went to have his first lenses fitted last week and a few hours later the eye swelled up and had become infected, so guess its going to take a little time to adjust to the lenses.

Thanks for all the info and I appreciate everyone taking the time to reply

Lulu

[Karl R]

Unfortunately lulu there is no quick fix for treating KC, there is a lot of trial and error to find the best fit with lenses and to determine what would be the best treatment, all this takes time. It is worth persevering with it though, even if it is frustrating at times and from experience it will be, as in the long term the outcome is better.

Although there will be certain limits as to what your son can and can't do in the short term, long term he will be able to rule his KC life and not let KC rule his life. As I've said here on many an occasion, I think that KC 'ers are of much stronger character than non KC'ers because of the challenges we have face or have to face and how we overcome these. Your son has his whole life ahead of him, and because the KC has been picked up early he should be able to lead a "normal" life.

[GarethB]

Lulu

As Karl says, KC is character building.

It is very easy to get down hearted, when I was first diagnosed I was playing Rugby at high level and just started motor sport.

I found ways to overcome vision issues with playing Rugby thanks to the other players. Went from scrum half to playing in the scrum, I had a nack of feeling for the ball with my feet and won 95% of all the scrums we were in!

Once found a lens that fitted, I could continue with motorsport which after grafts I continued for some years at a semi-professional level.

At each step you feel there is an impossible mountain to climb, but with the help of friends and familly (going back 20 years before this group existed), we broke any problem down to small problems which I gradually overcame.

Now without lenses, the only thing I can not do id drive, with lenses the only thing I can not do is motorsport due to rule changes and the type of lens I need being banned. This will not be forever as a contact lens manufacturer is allowing me to participate in their research to develop a soft lens for KC which I will be allowed to compete with.

Technology is constantly changing, so what is a challenge now, in a few years may be very simple.